‘Big Fun’: My Make-A-Wish
Make-A-Wish is an organization that offers gift experiences to very sick children younger than 19. If a child has a dream, like becoming a superhero, Make-A-Wish will make that dream come true.
I was lucky enough to be a Make-A-Wish kid, but I could never settle on a wish. My family (my mom especially) was always so giving; I never wanted for anything. Sure, we were always scraping two nickels together, but my needs were always met. Hence, the only wishes I could come up with were for other people.
Some of my requests: “Perhaps you can renovate my mom’s room.” “My grandma needs a bigger hospital bed.” “Can I bring everyone in my class to Disney World?”
I was all over the place. The Make-A-Wish consultant I was assigned was so kind, and she had the difficult task of tweaking my requests.
“The wish is supposed to be for you, honey! How about a special bedroom or trip for you?”
After years of contemplation, my consultant reminded me that my wish was due to expire. We had a long conversation about my needs as a soon-to-be high school graduate and, at the last second, I wished for something that all of us could enjoy: a huge, “Sweet 18” birthday party.
My consultant asked me to describe my dream party, including the food, venue, theme, and anything else I could think of. I told her that I wanted a local venue; that way my friends and family wouldn’t have to travel far. Naturally, I wanted some kind of theatrical aesthetic. I wanted a place where my guests could take pictures. I wanted a fast-food-style buffet with hot dogs, hamburgers, and chicken.
Most importantly, I wanted to give a discreet thank-you to the people at Make-A-Wish and the Cystic Fibrosis Foundation (CFF) for all of their hard work throughout my life. At the time, my disease was a secret to all but a few, so a large banner that said “Thank You, Make-A-Wish and CFF” was not ideal.
They granted every request and then some. They booked a local New Jersey venue called the Palace, and yes, it was as grand as you’re imagining. Drama masks, purple tables, 6-foot-tall feathers, and a purple carpet (instead of red, but functioning the same way) filled the space. The DJ had a playlist of all my favorite musicals, along with the top hits of 2011. The Make-A-Wish team even snuck a small drawer under my table so that I could easily access all of my night medication.
It was a chronically ill teenager’s dream. When I entered the Palace in my purple gown, my consultant asked, “What do you think?”
What did I think?! It took all of my self-control to keep from drooling. I gave her a huge hug and thanked her over and over again.
My 200 guests had the same jaw-dropping reaction that I did, and we spent the entire night dancing, playing games, taking pictures, and enjoying the backyard, barbecue-style buffet. The guests also went above and beyond with my request to wear a splash of purple, which was my secret nod to the foundations.
Aside from the obvious benefits of seeing my friends and family have big fun and celebrating my birthday, I was thankful that I finally felt like a teenager. That was the true desire that Make-A-Wish granted that night, a feeling of normalcy. I didn’t have to leave the party early to take my night pills or waste energy hiding my symptoms. My scars were strategically covered by my gown. Most importantly, I didn’t feel like I was 18 going on 80. I just felt 18.
Nicole Kohr at the Palace in Somerset, New Jersey, in 2011. (Courtesy of Nicole Kohr)
I only recently discovered my favorite teen story, “Heathers,” a rock musical based on the 1989 film starring Winona Ryder. The moment I heard the song “Big Fun,” I flashed back to my Sweet 18 and smiled for hours. In the song, the lead character attends her first high-school party and has the time of her life. She drinks, gets high, dances, and feels beautiful. Granted, I wasn’t wasted at my Sweet 18, but I was high on life. That’s for sure.
There’s a set of lyrics from the song that makes me giggle:
“Dreams are coming true/ When people laugh but not at you!/ I’m not alone! I’m not afraid!/ I feel like Bono at Live Aid!/ The house is ours/ It’s time for big fun!/ Big fun!”
Words have never been truer! Perhaps one day a nonprofit will grant wishes to chronically ill adults over the age of 19. Would anyone like to attend my sweet 30th birthday party this winter and have some big fun?
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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